Hi, i’m a fellow chiarian with syringomyelia who had decompression surgery in march of 06 (failed for symptoms but showed corrected). Srynx not touched its thoracic. Recently I was sent for mri to check an aneurysm that my doctor said was found a year prior by neurologist. Neither my dr or myself knew I had this aneurysm as it was not on the neurologists first report sent to my doc. Now the aneurysm has shrunk by about half, Im not sire where its at neck/ head? But the mri also showed my brain sagging to the tune of …1.7 cm, huh? Is that not kind of a lot of “sag”? Has anyone had or know someone who had cranial ptosis, and had the surgery? I would like to hear about it, how it went what to look for or look out for. Lol
I have my 1st apt next Friday, and hoping to get some answers. I’m half thinking since its not cm/sm - maybe someone can actually help me? Hmm the concept is nice anyways. 
also, the aneurysm, anyone have one, have or not have surgery? I’ve done my research (as much as one can on these things), but I want to talk to real people, who have been through it and know the struggles we all face. Any advice or personal stories welcome, please. I need to get some info, even if only remotely related to my current situation, from people that know. From people who have been there. Thank you in advance.
Hi! I just had surgery with Dr. Heffez on September 16. I had cerebellar ptosis. My first appointment with him didn't seem very reassuring, he didn't think surgery would do much. But days later he looked at ,my MRI again and said he would do the surgery. The first surgery I had the surgeon took out more boine then needed. It wasn't an easy decision to go through with it because it wasn't certain. It would even help. But after talking with my mom and family and other doctor back home I knew I needed to just do it. And now I am thankful I did. After the surgery Dr. Heffez said that my cerebellar tonsils were adhering to my brain stem, the left part of my brain was slumping and I had a neuroma. So he redid the original surgery and then put in a titanium shelf to kind of create shelf. Surgery went smoothly. I was in the hospital for 5 days and that was the hardest part. I had to be completely flat for 48 hours and that was tough, especially since I was vomitting quite a bit. But after the 48 hours I was aloud to get up and eventually walk around. I go back for my follow up next month. I don't see big changes yet, but they said that with years of being sick it will take some time for recovery. But I am glad I had the surgery. Im here if you have any other questions!
Thank you so much. I hope you are doing better. Im not sure why mine happened as my 1st was done in march 06 and no herniation until sometime within the last year. Im thinking from a car accident. Id dr Heffetz from chiari institute in Wi?
Oh wow! I needed my first surgery because I was in a car accident. It made the herniation worse and symptomatic. And since the first surgery I have just felt worse. And yes, Dr. Heffez is in Wisconsin. I live in Baltimore, so the travel was a pain, but worth it. If you go out to him stay at a place called Kathy’s House. It is amazing there and they will do anything to help you out.
My cm was congenital, but I totally get that feeling worse after surgery feeling and not getting better. Thats been my mo all along, but that was before my accident then it just got worse with more symptoms. My Doc wants me at Chiari Center in Great Neck, but originally being from MN I think I would like WI. Lol. Thank you for the tips as well, as if my apt on the first does not go well i’ll be contacting Heffez.
Jennifer, I would be so upset to get this news. I’m so sorry. IVe heard that low pressure/hypotension can cause tonsil herniation. Also, if you had a “failed” decompression please look into EDS. I feel a little like a broken record with the EDS but it has effected me, and several others, post decompression. If you have lax neck ligaments it can cause weak cervical or weak cranio cervical joints- this mimicks Chiari symptoms. I know that TCI does a good job with screening for the instabilities. Heffez screens for it somewhat but I’m not sure he fixes it??? He did my decompression - and I think he did a great job, but I am having to see another surgeon for my neck. I hope you are able to get to the bottom of it soon
Jenn
Ivy - had cranioplasty for Brain Sag (Cranial Ptsos) three weeks ago. Still in great pain... spasams are new. This is my 4th surgery - Decompression x 2 (2010, 2011) and surgery to repair major CSF leak after second decompression in 2011. Symptoms got worse in fall of 2012 and it took a year to get this latest surgery to happen. Mostly because GP was not convinced I was suffering.....I am waiting for details of post op MRI to find out how successful the operation has been. Pre Op I had a syrinx from C1- T4 and a cyst like growth from the 4th ventricle to the medulla. Symptoms since latest operation in clude the spasams, greater weakness in right arm. A little feeling has returned to my feet. Pre op I was numb from toes to mid chest as well as in arms. I guess it is too early to tell the outcome...
Im one year after surgery. Headaches off and on. Mri came back last week ok. But strong headaches have started up and if i tap on my scar my brain hurts even more. When i bend or turn i get the wooshing sound. Yet nothing to " report" hmm. Light sensitive, motion sick, uncoordinated, anxiety, weak legs, tired muscles. I have heard of SJOGERS DESIESE. but everything fits chiari with me yet the Drs who dont know shit cant figure out what chiari even means. Ive gone into a hospital where the whole staff didnt believe in Chiari. The same hospital i had my corrective surgery at. Umm hello? Lacking confidence much?!
Well returned from USF Tampa, Dr Agazzi. He left me sit for two hour then took 15 mins to tell me Chiari symptoms are not really chiari symptoms and that my 1.7 cm cerebellar ptosis is nothing and to do nothing. Said he can’t help, NONE of my symptoms are related. Starting over square 1, next stop chiari center I guess. I’m so sick and tired of NS’s that say no chiari not affecting you, and look somewhere else for help.this truly breaks my spirit every time. Not sure what else wld cause headache, dizzy, numb, slurred speech, stumbled walking due to imbalance etc. if not a neuro or neurosurgeon, then who?!
Yes Kyle, lacking confidence! Lol I’m so mad I could spit nails and so sad I could cry until the end of time.
Jennifer, there’s nothing more defeating than a brain surgeon telling you that you are fine. Don’t buy into it, you know what you know. Find another NS- i think The Chiari Center is a great option. I’m sorry that guy said those things to you- just add it to the war stories and keep going.
Jenn
Thanks Jenn!! I actually refused to go to any more specialists for two years. I moved to fl and new doc now understands why after multiple appointments being told the same story. I figured with the new ptosis that it may be different. Was last try before I have to go out of state but if thats what I have to do I will. I know one person who had great reults at Chiari Center so crossing fingers. Thanks for your positive words, makes a difference. ~Jen